G. J. Treharne

Well-being in Rheumatoid Arthritis: The Effects of Disease Duration and Psychosocial Factors

This study examined the multivariate relationships of psychosocial factors with well-being in rheumatoid arthritis (RA). Fifty-five patients with early RA (< six months), 52 with intermediate RA (one-seven years) and 47 with established RA (> seven years) completed questionnaires on psychosocial factors and psychological and physical well-being. Illness perceptions related to worse depression and life satisfaction (especially in early RA) and to longer morning stiffness (especially in intermediate RA). Optimism related to lower pain in early and intermediate RA. Social support related to lower fatigue in established RA. Indications for interventions targeted by disease duration are discussed.

Psychological well‐being across 1 year with rheumatoid arthritis: Coping resources as buffers of perceived stress

OBJECTIVESnUsing the transactional model of stress and coping, the present study investigated whether specific coping resources act as buffers of the relationship between perceived stress and psychological well-being among rheumatoid arthritis (RA) patients.nnnDESIGNnA longitudinal observational study was carried out with assessments at baseline, 6 months and 1 year.nnnMETHODSnMeasures of perceived stress, coping resources (optimism/pessimism, social support and explicit active coping strategies) and psychological well-being (anxiety, depression and life satisfaction) were completed by 134 RA patients. Demographics, RA duration, pain, fatigue, functional disability, antidepressant use and physical comorbidities were recorded and statistically controlled for.nnnRESULTSnPerceived stress had the strongest relationship with psychological well-being at baseline, and affected anxiety after 6 months. Optimism and pessimism predicted psychological well-being across 1 year. Active behavioural coping buffered an association of stress with depression at baseline, while baseline active cognitive coping buffered the effect of baseline stress on life satisfaction after 6 months.nnnCONCLUSIONSnPatients with RA under greater perceived stress who do not use active coping strategies appear to be at risk of psychological comorbidity and may therefore benefit from interventions teaching specific active coping strategies. Larger observational studies and interventions are required to confirm and extend these findings.

Medication adherence in rheumatoid arthritis: effects of psychosocial factors

Several demographic and psychosocial factors have been shown to predict adherence to medication for different chronic illnesses, including age, satisfaction with medical consultations, social support, optimism, and perceptions of medications. However, little is known about how these factors relate to adherence in people living with rheumatoid arthritis (RA). Cross-sectional predictors of medication adherence were investigated among 85 outpatients with RA (75% women; mean age 58.88 years; mean disease duration 10.29 years). Participants completed questionnaire measures of psychosocial factors and adherence, while details of medication consumption, comorbidity and objective measures of disease activity (inflammation) were recorded from medical files. Results demonstrated that holding stronger beliefs about the necessity of medications, and believing that medications are generally not overused, predicted higher reported adherence to RA medications (over and above relevant demographic and medical factors). Adherence was also higher in people taking higher numbers of medications. These findings highlight the important role perceptions regarding medications play in terms of adhering to specific medication(s) and may prove beneficial in educational interventions for people with RA and health professionals who care for them.

‘Concealing the Evidence’: The Importance of Appearance Concerns for Patients with Systemic Lupus Erythematosus

Outwardly visible signs associated with systemic lupus erythematosus (SLE) can include facial rashes, alopecia and weight gain. We sought to understand the concerns of SLE patients about their appearance and the recognition of this by healthcare professionals. Semi-structured interviews were carried out with 10 women aged 26-68 years diagnosed with SLE for one to 12 years. Data were analysed with Interpretative Phenomenological Analysis (IPA); this seeks to describe and provide understanding of people’s experience of a phenomenon by studying in-depth a small number from a relatively homogeneous group (women with SLE in the present study). Analysis revealed three themes concerning appearance issues. Participants described public self-consciousness after the onset of SLE. Cosmetics and clothing were used skilfully to appear ‘normal’, hide the ‘self’ and assert control but could increase feelings of difference and isolation. Self-imposed isolation was also described and may relate to depression. The understanding of family, friends, colleagues and healthcare providers was also important. Awareness of the psychosocial concerns of SLE patients with life-changing skin disease may enable multidisciplinary healthcare teams to offer a more sensitive, practical service. The physical and emotional needs of SLE patients need to be ascertained and appropriate educational and psychological services are required.

Reactions to disability in patients with early versus established rheumatoid arthritis.

Objectives: This study examined differences in reactions to disability between early and established rheumatoid arthritis (RA) patients, and whether these reactions were related to age, physical functioning, acceptance of illness, or self‐efficacy. Methods: Thirty‐four patients with early RA (<2 years since diagnosis) and 84 patients with established RA (>4 years since diagnosis) completed the Reactions to Impairment and Disability Inventory (RIDI), and measures of anxiety, depression, acceptance of illness, self‐efficacy, and physical functioning. Results: Early RA patients reported greater future denial than established RA patients. Younger patients reported more hostility than older patients. Accepting the illness was uniquely related to less anger and hostility. Higher self‐efficacy for pain specifically related to greater shock, while patients with poorer self‐efficacy for other symptoms reported worse anxiety, depression, shock, and anger. Conclusions: Denial may be a coping strategy in the early stages of RA: anxiety, depression, shock, and anger appear to persist. Longitudinal studies of RA patients from diagnosis are required to plan interventions timed to maximize patient benefit and optimize healthcare resource utilization.

Cutaneous abnormalities in rheumatoid arthritis compared with non-inflammatory rheumatic conditions

Background: Cutaneous abnormalities are common in rheumatoid arthritis, but exact prevalence estimates are yet to be established. Some abnormalities may be independent and coincidental, whereas others may relate to rheumatoid arthritis or its treatment. Objectives: To determine the exact nature and point prevalence of cutaneous abnormalities in patients with rheumatoid arthritis compared with those in patients with non-inflammatory rheumatic disease. Methods: 349 consecutive outpatients for rheumatology (205 with rheumatoid arthritis and 144 with non-inflammatory rheumatic conditions) were examined for skin and nail signs by a dermatologist. Histories of rheumatology, dermatology, drugs and allergy were noted in detail. Results: Skin abnormalities were reported by more patients with rheumatoid arthritis (61%) than non-inflammatory controls (47%). More patients with rheumatoid arthritis (39%) than controls (10%) attributed their skin abnormality to drugs. Cutaneous abnormalities observed by the dermatologist were also more common in patients with rheumatoid arthritis (76%) than in the group with non-inflammatory disease (60%). Specifically, bruising, athlete’s foot, scars, rheumatoid nodules and vasculitic lesions were more common in patients with rheumatoid arthritis than in controls. The presence of bruising was predicted only by current steroid use. The presence of any other specific cutaneous abnormalities was not predicted by any of the variables assessed. In the whole group, current steroid use and having rheumatoid arthritis were the only important predictors of having any cutaneous abnormality. Conclusions: Self-reported and observed cutaneous abnormalities are more common in patients with rheumatoid arthritis than in controls with non-inflammatory disease. These include cutaneous abnormalities related to side effects of drugs or to rheumatoid arthritis itself and other abnormalities previously believed to be independent but which may be of clinical importance.

Microalbuminuria in rheumatoid arthritis in the post penicillamine/gold era: association with hypertension, but not therapy or inflammation.

Rheumatoid arthritis (RA) associates with excess cardiovascular (CV) morbidity and mortality. New screening tools are needed to better identify patients at increased CV risk. Microalbuminuria (MA) has been shown to associate with inflammation and future cardiovascular disease (CVD). In the present study, we assessed the prevalence of MA in a secondary care cohort of RA patients, aimed to identify factors associated with its presence and addressed its relationship to CVD and the metabolic syndrome (MetS). A total of 342 RA patients were studied. MA was defined as an albumin-creatinine ratio ≥22 (males) or ≥31 (females) milligrams per gram creatinine. The independence of the associations of MA was evaluated using binary logistic regression analysis. Prevalence of MA was 11.9%. Subjects with MA had increased prevalence of hypertension (HT), insulin resistance and type 2 diabetes. In binary logistic regression, only HT (ORu2009=u20095.22, 95%CI: 1.51–18.07, pu2009=u20090.009) was significantly associated with MA. There was no association between prevalent CVD and MA, but patients with MA had twofold increased odds of having the MetS. MA is relatively common in RA patients and is independently associated with the presence of HT. Given the association of MA with MetS, future prospective studies are needed to establish the use of MA as a screening tool for RA patients at increased CVD risk.

Avoidance of unhealthy fattening: A longstanding proposal

Diverse customary patterns of eating, drinking or movement are hypothesised to be effective in weight control based on laboratory experiments or theoretical calculations, in some cases supported by ecologically valid evidence. This method is applicable to healthy members of the public and to patients at high risk of and from obesity such as those having type-2 diabetes or chronic arthritis. Weight-reducing behaviour not adequately identified in current best practice educational messages includes: integration of exercise into desk-based employment; uses of stairs; uncompensated vigorous activity or reduction in amount eaten at a meal; protein level and carbohydrate timing in meals; having a snack. This paper presents the scientific parts of a request for funds to integrate a suite of research methods based on theoretical models that can be applied to identify further, culturally and locally specific eating customs that avoid overweight and reduce obesity and can be iterated in a continuous (re)development of evidence-based expert advice and self-care practices in health and chronic disease.

Meeting the needs of children who have parents with chronic inflammatory musculoskeletal diseases

Chronic inflammatory musculoskeletal diseases, such as RA, SLE and AS, affect millions of people worldwide, many of whom either are of parenting age or will already be parents at the time of disease onset. Living with a chronic illness involves adapting to a physically changing body while re-negotiating established roles (e.g. mother or father). Evidence-based information delivered at appropriate times during the course of illness is important to help such individuals cope with these changes. Moreover, a parent’s rheumatic disease may have a major effect on the children (defined here as <18 years of age) and the family unit. Although we, and others, have examined the effects on adult patients in the family context [1, 2], no one has adequately established the effect from the children’s perspective, nor is there any information or education resources to help children cope with their parent’s illness. The type of information and format that would be useful to these children remain unknown, and many related research questions (such as the amount and degree of care that children and young people provide to patients and families) remain unanswered. In studies about health-care experiences of women with SLE, it was apparent that the effect of the disease on the family unit was a major concern [3–5]. Children had to adapt to the fluctuating nature of the parent’s disease and tolerate being cared for by people outside the immediate family unit. They also took care of themselves, their mothers and other family members. Patients felt that no educational resources or support were available to help them have a discussion with their children, particularly as a family, about what the children understood and their concerns; hence, these matters remained unresolved [4]. Health-care providers did not seem to communicate about these issues, mainly because the patients interacted with many different professionals and did not feel they knew any one person well enough to discuss their psychosocial concerns [5]. Children, particularly those of school age, are often effectively excluded from health-care interactions between mothers, their partners and health-care providers, and may be uncertain about how to raise questions. The availability of educational materials would enable parents to facilitate family-based discussions. The timing of these discussions can be judged appropriately only by the individual family, as both the willingness to receive information about a parents’ illness and the ability to cope with it will vary from child to child. Within other disease groups (e.g. breast cancer), some information is available [6]. However, informing children about a parent’s diagnosis of a severe or chronic illness, or both, is mostly left to parents who are unprepared and unsupported [7]. Parents may overor underestimate their children’s ability to understand about their illness and may believe the children to be more sophisticated in their understanding than they actually are. During the school-age years, children expand their understanding of specific illnesses, but their knowledge may be made up of both real and imaginary features, and they could attribute parental illness to their own actions [8]. It may be more appropriate to have specific individual counselling available, which raises questions about who provides such a service and what training would be necessary to support this. Children who have a parent with a chronic illness may experience several serious consequences. For instance, a study explored the experiences and needs of such children living with a parent having mental health problems (e.g. depression) and found that children provided both emotional support and physical care for the parent [9], worried about the parent in the short and long term, were frightened to ask for help for themselves and were afraid to disclose the nature of their care responsibilities outside the family unit. These anxieties played a key factor in children’s inability to concentrate and their subsequent performance at school. People with chronic inflammatory rheumatic disease commonly experience feelings of depression and anxiety, thus the children may experience their parent with a low mood, as well as an intrusive chronic, fluctuating illness [10, 11]. In the UK, the Standards of Care for People with Inflammatory Arthritis and Connective Tissue Diseases developed by the Arthritis and Musculoskeletal Alliance (ARMA) suggest that at diagnosis, patients should have a full assessment that includes their psychosocial needs and families and carers should be involved in this process [12]. Ideally, patients should receive a tailored plan of care that provides information and education for both the patient and their carers. Although this process does not specifically address the needs of the children within the family unit, we argue that it should do so, as the quality of life within a family unit is inevitably a multidirectional process. In the UK, children are increasingly encouraged to form partnerships with their health-care providers to facilitate informed decision making. As children who are deemed